NJ Takes Next Step Toward Palliative Care Education, Outreach

Making sure nursing homes, hospitals, patients and their families understand services available for end-of-life care is one goal of legislation

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New Jersey would establish an advisory council on palliative care and require hospitals, nursing homes, and other facilities to educate patients or their family members on their care options, under legislation now advancing in Trenton.

A bipartisan bill designed to expand access and use of palliative care — treatment focused on reducing pain and suffering and increasing quality of life, not duration — sailed through the New Jersey Assembly last week with unanimous support. Palliative care is particularly important with elderly individuals reaching the ends of their lives, and with patients battling cancer and other terminal diseases.

Assemblywoman Nancy Pinkin, (D-Middlesex)

“Given that the state’s population is aging, with greater incidence of cancer and a higher prevalence of chronic conditions, the demand for high-quality hospice and palliative care services will undoubtedly increase,” said Assembly Member Nancy Pinkin (D-Middlesex), who has led the charge to pass the bill for nearly five years.

The legislation, which has roughly three dozen sponsors, is intended to ensure that patients and members of the public have access to accurate, comprehensive information about their palliative care options, the sponsors said. It calls for the state Department of Health to establish an outreach program and provider requirements and enables state leaders to appoint an 11-member advisory council to create the public materials and implement the program.

According to the American Cancer Society, which has long advocated for the measure, the ultimate goal is to create a more pro-active system that can identify patients suffering with a serious illness and connect them with palliative care options.

“Palliative care treats the whole person, not just their disease, by giving patients more control and helping to take away some of the pain, fear, and anxiety that many patients feel after diagnosis and during treatment and recovery,” said Samantha DeAlmeida, the ACS government relations director for New Jersey. She thanked Pinkin and praised the Assembly “on behalf of the 53,000 estimated” state residents who will die of cancer this year.

In New Jersey, the Governor’s Advisory Council on End-of-Life Care already exists, and in November it issued a long-awaited report that identified a number of opportunities for improving treatment for those suffering from terminal illness or age-related conditions. It also said the healthcare system lacked a comprehensive system to address the growing need for chronic, palliative, and end-of-life care.

Public outreach for palliative care

However, hospitals, physicians and other providers have teamed up to try and improve palliative and hospice care, and a number of groups are leading public outreach campaigns to help people plan and document their wishes for treatment options, if a terminal illness is diagnosed.

Last June, the New Jersey Health Care Quality Institute also released a policy blueprint with ideas on how to improve palliative, hospice, and other end-of-life care. Currently, the Garden State has some of the highest costs nationwide for this phase of treatment, and few people die as they had hoped — at home, without major medical intervention.

“Palliative care optimizes a patient’s quality of life by anticipating, preventing, and treating suffering caused by serious illness,” said Assemblyman Herb Conaway Jr. (D-Burlington), another longtime sponsor. Conaway is a doctor who leads the Assembly health committee. “It’s a compassionate approach to treatment that we should be promoting for the benefit of New Jersey families.”

While support for the concept is broad, palliative care is a relatively new medical concept and insurance coverage for the services are at times limited. Last year, New Jersey’s Department of Human Services expanded Medicaid coverage to enable hundreds of thousands of additional patients to have access to these options.

Pinkin’s bill (A-312) would require the Department of Health to establish a program dedicated to ensuring providers had accurate information to disseminate. It would also need to identify what institutions — hospitals, hospice, nursing homes, and others — would be required to participate, and ensure these facilities were sharing this information with patients and their families, as required.

Advisory council to help create campaigns

The proposal also calls on legislative leaders and the governor to appoint an 11-member advisory council to help the DOH with creating and distributing palliative care campaign materials. The Cancer Institute of New Jersey would also be involved in shaping the initiative.

What’s more, it creates a definition for palliative care, calling it patient- and family-centered and focused on optimizing quality of life by preventing and treating suffering. It can continue throughout an illness, to help address emotional and other needs, and is meant to support patient autonomy and choice. It is also designed to phase into hospice — a palliative program focused on the final six months of life — as appropriate.

“Palliative care works to improve the lives of cancer patients by making coordination of their care standard protocol during their treatment for cancer and is provided by a team of doctors, nurses, and other specialists who work together to provide an extra layer of support,” DeAlmeida, with ACS, said. “Palliative care can actually lead to a longer, more satisfying life for cancer patients and those with other major health conditions.”

The measure still awaits action before a second committee in the Senate, which has shown less enthusiasm for the measure in past years. The legislation would take effect four months after approval by the governor.